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  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited April 2014

    Sneaky also very excited for you exchange next week! It took time for me post surgery but now no worries other than when I did the spread eagle on slate steps with a mule train thundering down behind me on the trek. But those implants must be tough as nothing changed. You can tell Dr. Lennox that next week pre-op~~I am impressed with them. My neighbour yesterday said "nice tits" on FB from a photo taken a few days ago so I guess they look good too! 

  • She
    She Member Posts: 131
    edited April 2014

    Marian, awesome trip!  And now you're just 6 or so hours away from me .. so near and yet so far lol.  When are you back in Vancouver?  I'll be around for a couple of weeks in late May.  Maybe we (and anyone else available ...) can get together for lunch.

    Sneaky best of luck next week, Peter 'did' my right DIEP lol, say hi for me! (It's my problem-free side.)

    Hi to everyone, old and new!

  • MarieK
    MarieK Member Posts: 467
    edited April 2014

    I might be able to make June 21 but it's my daughter's 21st birthday so I could probably squeeze in a brunch or lunch if that works.

    I have fallen several times since BC dx.  

    I had a real balance and dizziness problem right after chemo and again while on Tamoxifen.  I also have an old dog who silently just stands around and trips me up!

    My latest fall (5 days after this last surgery) was pretty scary.  I was so hunched over and shuffling around that I lost my balance and tripped over my own feet.  

    No donkeys to blame just doing too much too soon after surgery.  I fell flat out on my butt and back and couldn't get up.  Luckily my husband and son were home to help me up.

    I used to wonder how old ladies fell down and broke their hips but now I know....

  • Sneakychiquita
    Sneakychiquita Member Posts: 110
    edited April 2014

    Well, if She is in town late May perhaps we can shoot for then instead. I'd love to meet up, Sheila! And if others can't come in May then I'd still be game for a second meeting in June. So, how does late May work for you all?

    I'll be sure to let Peter know your neighbour said you had nice tits, Marian Winking And I'll be sure to say 'hi' from you as well, She.

    Marian - did you have a drain this time?

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited April 2014

    Sneaky, no drains. Am off to that Big Sky Yoga Retreat what I have a scholarship for in May. It is May 29 to June 2 but we are driving so leaving maybe May 27. And let Peter know they hold up well when splatting onto slate steps in the Himalayas too!

    Where is your surgery going to be? Mine ended up being at UBC at the last minute instead of downtown~~way easier for transport.

    She, let's try to coordinate and as Sneaky says, some of us can maybe do both. Marie, hope no more falls for you!

  • Marlene18
    Marlene18 Member Posts: 48
    edited April 2014

    I like your pictures Marian. Very inspiring.

    I am just one year post chemo this week. Yay! To celebrate, I'm doing the Delta triathlon on Saturday. F*ck cancer. :)

  • Gardengirl66
    Gardengirl66 Member Posts: 44
    edited May 2014

    Marlene18, congratulations on being one year post chemo ! How was the triathlon ?

    I will be starting radiation in the next week or two , just wondering if anyone remembers what creams or lotions they used after for the area ?  Might check out  Whole foods in the next couple days .  I will be celebrating tomorrow , three weeks since last chemo, and supposedly , five years ago I would have only been at the half way point at 4 treatments, so tomorrow , a small celebration with the family to feel lucky with only 4, and to thank all the ladies that have gone through breast cancer before me , that made it a little easier for me ! Cheers to all the ladies !

  • Ossa
    Ossa Member Posts: 685
    edited May 2014

    Gardengirl. Use LOTS of Glaxol base (Costco has best deal)  Once I was done rads I started using organic emu oil (healthfood store) was amazing I also started doing saline soaks as soon as \I started to go pink  I am a redhead so very fair and I hardly burned at all

  • Gardengirl66
    Gardengirl66 Member Posts: 44
    edited May 2014

    Ossa, thanks for the info, I have used Glaxol  based  products before and with one of my kids when they where little. When you had your radiation treatment, did they treat lymph nodes in your neck area ? My radiologist  (Dr. Parsons) wants to treat some in the lower neck area... I have a little concern over for possible side effects.  I am guessing she is worried for that is an area where it could return ?? Will ask more questions on Tuesday when it all begins.

    Thanks again !

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited May 2014

    gardengirl, that was one of the 4 fields hit during my rads, about half way up my neck. In my case I believe it was because of 7/14 positive nodes and one of those was positive after chemo when I had my mastectomy and axillary dissection. I think that they are called supraclavicular and also another field was kind of the center line~~something mammary chain as I recall. Did you have any positive nodes? I would say that the only possible S/E for me is the continuing lump in my throat feeling. I saw a doctor in the swallowing clinic at UBC in Nov. and see him again this month~~he says it is possible that the swallowing muscles were affected by rads but as always, nothing seems clear! At first it was thought that some thyroid nodules were causing this "frog in the throat" feeling. Gotta say that I accept this as just another breast cancer take-away. I am here!

  • Ossa
    Ossa Member Posts: 685
    edited May 2014

    gardengirl.. I also had the nodes in my lower neck radiated,  I have dry skin in the radiated area. Definitely a different feel than the "good" side...Sometimes have the lump in my throat feeling but not all the time . It is all doable... This too shall pass....

  • Gardengirl66
    Gardengirl66 Member Posts: 44
    edited May 2014

    thanks Ossa and Marianelizabeth, That all makes sense to me, not too worried about it...but when you are not sure I always ask . The side effects  of possible lump in throat feeling ...at least I will be prepared. I did have one node positive ,of three removed.  I am not sure how to add that info to your profile.... Still very much a chemo brain, I get amused how I forget simple things all the time .... My children are getting used to it now.

    I am receiving 16 , with 4 dose dense , so twenty in total.  Going out to get my lotions and potions  and some tank tops to wear. 

    Thanks for the info , it all helps to get through this crazy adventure !

  • thisisme
    thisisme Member Posts: 45
    edited May 2014

    Add me to the list of West Coast gals.  Dx when living in Toronto, but been in North Vancouver for a few years now.  I have similar story to many of you- chemo, rads and mast..  Dx in 2009, mets in 2011. Crap. 3 boys, aged 8, 10, 15.on LTD.   Looking forward to connecting with all of you. One question, I see that MarieK has had a PET scan. (oh, and MarieK and I go to the same clinic. I have seen her MO when mine was on mat leave) Has anyone else had a PET scan? I have never been offered one. Because of mets, I get a CT or MRI every 3-6 months but not PET. I thought that BCCA had very strict guidelines on who could get one and not sure if I would benefit from one???? Does anyone know if it would be useful to have one?

    Will follow this board now that I have found it.  Has a June date been settled?

    Jacqui 

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited May 2014

    Hi Jacqui, welcome and I look forward to meeting you hopefully in June. I did have a PET scan just before chemo and I think it was because a lung nodule was identified on the CT scan and also maybe because the pathology from my lumpectomy and supposed sentinel node biopsy (I say supposed as my BS took 8 and 6 were positive) were so much more aggressive than anyone anticipated. MO said it would be a good baseline to have for the future. Sounds as though your mets are "stable" if one can use that word? I also go to the Vancouver BCCA office though only every 6 months~~one coming up in late June. 

  • adagio
    adagio Member Posts: 713
    edited May 2014

    Jacqui - I have never had any PET scan nor a CT scan - only a bone scan. I have asked my MO about the other scans and she has assured me that they ae not necessary. However, it does seem that each oncologist does things very differently!! I guess we have to trust them to do the right tests - however, there is no harm in asking for them. Not sure what the protocols at the cancer agency are for each type of scan. Welcome to the thread - you will get all kinds of helpful input from the ladies on here.

  • Gardengirl66
    Gardengirl66 Member Posts: 44
    edited May 2014

    hi Jacqui, I have had a PET scan, at the beginning of all of this.  Are you going to Lionsgate , I also live in North Vancouver , and had my surgery and chemo there. I feel at this point I have had every scan available .  I think it depends on the oncologist. Do you see Dr . Sasha Smiljanic?

    Wishing  everyone  all the best !

  • thisisme
    thisisme Member Posts: 45
    edited May 2014

    Thanks for the warm welcome.

    Adagio I guess they all do things differently.  I had CT and MRI when first diagnosed and now that I am stage 4, I get scanned about every 3 months.  Usually CT but because of back pain, she throws in an MRI every once in a while to mix it up!!! I think most docs dont scan if you are not stage 4.I am going to ask about the PET scan at next appt ( I go every month) but am not really that keen to get it. But I like to ask her questions to keep her on her feet!  I see Dr Bains. I think she is a pretty recent grad ( less than 5 years) but I know she gets good back up with Sasha and others.. GardenGirl, did you just finish chemo? or just start?  My avatar is from my early hair regrowth days post-chemo.  will update it soon....maybe after haircut tomorrow.

    marianelizabeth, my mets were stable for 3 years until last scan so now on to new treatment. will be scanned again soon to see if it is working. Have some spinal breaks so off to see a neurosurgeon to see if it needs to be glued together. Had a uterine biopsy last week, too as I have endometrial thickening. oh, and I also have plueral effusions. You wouldnt know it from looking at me that I had all this stuff. Actually, none of my friends know about this. They just think I am a stay at home mom that is always busy at appointments... :-)

    Looking forward to learning about all of you.  There is so much more to us than this F*%#ing Cancer.

  • MarieK
    MarieK Member Posts: 467
    edited May 2014

    Hi Jacqui!

    So sorry you've had to join our group but glad that you found us!

    Last year I had 2 PET scans within months of each other while the drs were trying to figure out what was happening on my femur.  I am scheduled to have another one in July as a follow up post rads for BC mets on same femur.

    I've had a lot of scanning in the past few years but not until something was amiss with my bloodwork in 2011/2012.  

    It seems kind of strange to me not to be scanned before treatment to see what we're dealing with and then again after treatment to make sure it worked!  But I guess each dr has a different opinion on treatment for each patient.

    I've seen Dr Bains when Dr Smiljanic was not available.  She is very nice and knowledgeable.  I used to be a patient of Dr Klimo until he retired (I think he's come out of retirement and now consulting at another clinic?) and was transferred to Dr Sasha.  I like him and I'm pleased with his treatment plans so far....

    You sound really busy with your boys - I've got more free time now that my youngest (still at home) is almost 19 and driving himself, working and going to CAP.  But I miss the busy days of kids at home and the carpooling to school and sports activities.

    If you're up to getting together for a quick coffee chat before a group get together let me know via private message. 

    Marie

  • MarieK
    MarieK Member Posts: 467
    edited May 2014

    I haven't been on the discussion boards much lately.  

    Nothing new to report from me health wise - except I'm starting to feel more and more "normal" each day since my last procedure (fat grafting recon & tummy tuck).  For almost 3 weeks I had a pain in my lower right side - anything I put in my stomach fills me up and as it passes through I was feeling pain.  I've been using "smooth move" tea at night to help alleviate that and I'm pretty much pain free now.

    I'm hoping to get the go ahead to start doing some core exercise and lifting at my next PS appt next week.

    On a sad note we had to put down our old dog Sam.  He was almost 14 and had been deteriorating since Christmas.  He was a great dog!

    image

    He is sadly missed by all of us but mostly his younger brother Murphy (on the right).

    image

  • dutchgirl6
    dutchgirl6 Member Posts: 322
    edited May 2014

    Marie, my condolences to you on the loss of Sam.  What a lovely pair of pooches. Wheatens?  It's been a year since we said goodbye to our Sadie (my profile pic) and rarely does a day go by that I don't think of her.  She was my rock throughout my cancer journey, and barely left my side during chemo.  Such wonderful companions. Gentle hugs to you.

  • Gardengirl66
    Gardengirl66 Member Posts: 44
    edited May 2014

    hi Jacqui, sorry if I asked too many questions, I did not get to write everything as I had a phone call from a friend I had not heard from in a few months. I have finished chemo, the last was April 11... Still riding out the side effects, but doing well . I am seeing  Sasha, and  when he is away I saw a different  doctor , but at the moment I can not remember his name. Tomorrow I start radiation, I finished buying all my lotions and potions, and tank tops to help get through the next part. I am also sorry to hear  about your ongoing treatments (( hugs)). I also chose not to tell everyone, a few close friends  and family. I am glad not everyone knows, I do not have to always be in  cancer land...I get a break to be "normal".... I can understand  that. Jacqui I am sorry if I asked too much.

    MarieK, I am sorry to hear of your loss of Sam. I hope your other dog Murphy will be okay, very sad for your family. I am glad to hear you found something to help with your pain. Hugs to you, I hope you continue to heal with minimal to no side effects.

    Hugs to everyone.

  • thisisme
    thisisme Member Posts: 45
    edited May 2014

    Hi GardenGirl... not too worry, you didnt ask any weird or too many questions.  I didnt find rads too bad except it was everyday and about the last week or so I got the "burn".  I think I iced it??? but can not really remember now.  Good luck with that.  Your skin gets discoloured/tanned but it does eventually fade back to normal.  I hope it goes easily for you and you dont find the commute too bad. I found the staff there to be great and on time. I was working across the street at City Square at the time and would pop over at lunch time to get zapped.  How did you keep the chemo a secret? Did you have a good wig?

    So sorry to hear that you loss Sam.  It must be very confusing for Murphy.  How is he managing?

    Hugs to all....

    Jacqui

  • Gardengirl66
    Gardengirl66 Member Posts: 44
    edited May 2014

    hi thisisme,  thanks !  I feel lucky, my parents live two minutes from the cancer/radiation building. So I have parking in their building, a brief walk, then socialize and visit parents. The staff there are great so far, was there for about 40 mins today. I will have 16, with 5 boost at the end on the incision . I did manage to get a wig almost identical in colour as my real hair, people that do not know just think I had my hair cut... The funny part ,I get more complements on it than my real hair . My kids (14 and11) find that part really funny. I prefer no wig.... But my kids originally did not want too many people to know....it is nice to see them get comfortable with my baldness and cancer.

    A question to everyone, has anyone come across a program in a gym or community/. Rec. center for people recovering from cancer treatments?  I would like to try and get into better shape.... Without the intensity of being a super athlete ....just not there....yet ...  

    Thanks 

  • Sneakychiquita
    Sneakychiquita Member Posts: 110
    edited May 2014

    Marie - So sorry to hear about the loss of your Sam. But glad to hear you're healing.

    Gardengirl - If you're interested and qualify, there are often exercise research studies on the go for breast cancer patients. Ask your MO if she/he knows of any or peruse the bulletin boards next time you're at the BCCA.

  • lamp
    lamp Member Posts: 15
    edited May 2014

    Hello peeps! Anybody from Vernon,  Kelowna area! Would love to have a get together ! 

  • Gardengirl66
    Gardengirl66 Member Posts: 44
    edited May 2014

    hi Sneakychiquita, thanks for the info, will check out BCCA, I had just been looking in gyms and rec. centers.... One of those ..why did I not think of  that. Thanks for pointing me in the right direction. 

    First week of rad. treatment  done,starting to get the hang of "do not move "and "deep breath now and hold".  

    Wishing everyone a wonderful weekend  and Happy Mother's Day for everyone celebrating it!!

  • dutchgirl6
    dutchgirl6 Member Posts: 322
    edited May 2014

    Hi Lamp, welcome aboard!  I'm in Kelowna, would love to meet with some local gals.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited May 2014

    I noticed while away that there was discussion about a get together in June. I am happy to volunteer my house again for a potluck lunch~~it worked so well last time. Let me know if there is any interest for after June 12. I don't have a calendar in front of me but I think the weekend is June 15/16 and next one is June 22/23, then I guess it is a long weekend?

  • Sneakychiquita
    Sneakychiquita Member Posts: 110
    edited May 2014

    Hi ladies,

    I haven't been very active on the boards of late, but I see that a lot of us have dropped off the radar. Originally, I proposed a get together on June 21 which I now have to cancel. Let's blame it on chemo brain, but I totally forgot that June 21 is the day my colleague rides his bike from Kelowna to Delta in an effort to raise funds for cancer research. This is the fundraiser that is completely run by volunteers so 100% of funds raised goes to research (Ride 2Survive). He's riding it again for me and one other friend of his who has been recently diagnosed with cancer and I'd like to support him on this day by feeding him along the way. As far as I know I can make it on June 14, but if the majority can make it the following weekend, then so be it. 

    Hope you're all doing well. Speak up if you'd like to get together soon.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited May 2014

    I can do the 14th and as above, am happy to host another potluck at my place.

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